My Crazy Life: Update

First of all, i'm sorry that I haven't updated my blog in so long. Things have been so hectic here and I will try and fill you in on all the details now the best I can!

Things haven't been going too well for me lately. On Easter Sunday, I fell in the kitchen on the concrete flooring as my leg gave way. As I fell, I somehow managed to knock my right arm and it started to swell and bruise a few hours later. I wasn't going to tell my mum about it as I hoped that it would get better but it didn't and eventually I broke down in tears of pain and had to tell her.

She was shocked at how bad my arm was. It had only been a few hours since the injury and my arm had swollen up to become 3 times bigger than the other arm and was starting to turn black and blue. She wanted me to go straight to the hospital but I refused and told her that there was nothing they would be able to do.

The next day, my arm still wasn't any better but I decided to go to my grandma's as I hadn't seen her in over a week. She took one look at my arm and insisted that I went straight to the hospital. She doesn't know much about RSD so I think it was a bit of a shock to her as to how bad it was.

I really didn't want to go to the hospital but agreed to go and get my arm examined to rule out any other possibilities other than the RSD. The nurse in A&E was lovely and she took the time to listen to us about RSD and then decided to xray my wrist due to how bad it was.

When the X-Ray results came back, the nurse came to see us and said that it looked as though I had an hairline fracture over my radius. She was going to put my arm in a cast but my mum explained about the RSD and how you shouldn't cast an RSD limb so she decided to just put it in a really thick bandage. The nurse made an appointment for me to go to the fracture clinic where I would see an Orthopaedic Doctor to see what they wanted to do.

The next day, my mum took me to the fracture clinic and we saw the Orthopaedic Doctor there. She was really nice and was really shocked at how bad my arm looked. She called my Pain Management Doctor to come and take a look and he too couldn't believe how bad it was and said that it was the worse RSD flare up he has ever seen!! My Doctor decided to increase my Ketamine to try and get me through this flare and my mum also told him that I was having problems with my left shoulder. He took a look at it and diagnosed me with another spread of the RSD as he could see how sweaty my arm was and that it was extremely red.

My Doctor was concerned about my arm so told me to go back to the hospital a week later where they would re-xray my arm and decide what to do.

My Physio's had suggested trying botox for the dystonia in my left leg so my mum mentioned it to my PM Doctor. He said that he had got a letter from them and spoken to other doctors about it and basically, no one is willing to take the risk due to my medical history. I had a nerve block when I was first diagnosed and that put me in a wheelchair for 13 months and then a ring block and that created Myoclonic spasms/jerks so every doctor that he has spoken to isn't willing to try it as they fear that it could make things worse. He is going to speak to some other doctors though and see if they will be willing to do it and I have an appointment with my Neurologist on Monday so will discuss it with him then.

I'm really not sure what to make out about the Botox situation. I think we need to try something else as a last resort as nothing else has worked but I don't know whether I am prepared to take the risk of making things worse either. I guess it is one of those situations where you have to weigh up the pro's and con's.

Anyhow, a week after I saw the doctor in the fracture clinic, I returned back to the hospital for yet another xray and to see the Orthopaedic Doctor again. The Doctor re-xrayed my arm and said that she couldn't see any fractures this time!!!! I really didn't know what to think when she said that. I think I was just in shock and denial as I realised it was another RSD flare. Don't get me wrong, I didn't want my arm to be broken but at least with a fracture, it would be better within 4-6 weeks, with RSD there are no guarantees.

The Orthopaedic Doctor explained that it was the worse RSD flare up they have ever seen and that it appears as though my nerves have been causing my blood vessels to constrict and therefore blood has been leaking out - a bit like internal bleeding I suppose.

I expected the doctor to lose interest once she found out it wasn't broken but she didn't and said that she was glad I went to the fracture clinic as it teaches them more about RSD. I was so glad when she said that as most doctors don't want to even consider learning about RSD.

The Orthopaedic Dr told me to rest my arm as much as possible in a bandage but also try and move my fingers and elevate it to get rid of the swelling. I also have to have weekly Physio on it to try and get things under conttol more.

I think I am still in a bit of denial about the RSD flare. I just feel so sad sometimes as I know it's RSD and that it isn't going to be a quick fix. My family still think that it is broken and that the doctors have misdiagnosed it which is realy stressful at times as they don't understand what RSD is.

I will come back to edit my post in a bit - need to go and rest for a little bit as my arms hurting a lot!!!

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Last week, I had a 2 day selection event at a football club near where I live about a college course that I am hoping to do.

As some of you know, I am currently taking my Year 9 Options which is where you basically have to choose which subjects you want to do in the last 2 years of school. You have to do Maths, English, Science and ICT (computers) but can then choose any other subjects you want to do.

The meeting at the football club was about the Health and Social Care Course that I have applied for and was really interesting. We did lots of team building exercises which enabled us to get to know others that have applied for the course and may be working with us if we get a place. We also got a chance to meet up with the teachers who are extremely nice and caring.

The teachers showed us a video about the course that we have applied for. It is spilt up into 5 sectors so that it covers 5 different topics. One sector is in Health, another is in Child Care, the third one is in Criminal Justice, another in Admin work at hospitals etc and the last one in supporting people with behaivoural issues or that are autistic etc. If we get accepted onto the course, we have to do 50 hours of Placements covering all of the 5 different sectors so you can work in an old people home, youth club etc etc. All of the children on the course in the video said that it was very good and that they have learnt a lot from it.

On the last day of the course, we had to go for interviews with the teachers. The teachers were really nice and asked me lots of questions like why have I applied for this course, what do I hope to get from it etc. I told them that I suffer from a chronic pain condition and that I have learnt a lot about illnesses and what to help other people that are going through similar things to me. The teachers were really interested in learning about RSD which I thought was nice!

The teachers said that they had no problems with me getting onto the course academically but that they wanted me to consider whether the 50 hours of placements would be too much. They asked me to go and have a think about it and then called me back to tell them my decision. I told them that I know that it will be hard work and stressful but that it is something that I want to do and feel will be worth it in the end. The teachers were happy with my decision and said that was fine as long as I felt comfortable and wanted to do it.

When I spoke to the school, they told me to apply for the course that I went to college for and also another one which is exactly the same but with 10 hours placements instead of 50 so at least that way, if I don't get accepted onto the one I want, I have something to fall back on. If I don't get accepted onto both courses, I don't know what I will do as there isn't that many subjects at school that I am interested in that I could take in my Options really.

We should find out by the end of the week if I get a place on the course! I really hope I do as it is something I want to do and the teachers seem as though they will be able to work round me! There are 15 places on the course and 22 people have applied. The course lasts 2 years and if I get accepted, I will have to go to college 3 days a week.

After we had our interviews at college, we did more team building exercises and the football players from our local football team came in! It was really nice to meet them as I support the team! They came in and presented us with certificates and also signed some programs and things for us!

Me and my mum have been away for the weekend on a mini break. We have been to the South of England to see my grandad and his wife, Carol. It was really nice as they live in Spain which is a 3 hour plane journey so I don't really see them that much. They took us to lots of interesting places including a zoo called Monkey World which was really good. It had all sorts of monkies and the zoo keepers rescue them from neglect and try and nurse them back into health! We also went for lots of meals to lovely restraunts which was nice and we got to meet up with my grandads wife's parents for the first time ever! I'm paying for the trip now but it was definitiely worth it!

So, that is my crazy update! Hopefully things will start picking up for me soon! Please keep your fingers crossed that I will get accepted onto the course and I will keep you all updated!!!

The ABC's Of Me (And Then Some)

A - Age: 14 years old

B - Bed size: Double Size Bed - that way, I have plenty of room for my RSD leg!!!

C - Chore you hate: Cleaning my chinchilla and hamsters cages out as they always smell!

D - Dog's name: Jack

E - Essential start your day item: Hmm, probably a shower and coffee to try and wake me up!

F - Favorite color: Lilac and Pink - i'm a real girly girl when it comes to that!

G - Gold or Silver: Gold but I like both :-)

H - Height: Hmm, i'm not sure but over 5ft

I - Instruments you play(ed): I don't really play any although I did play a recorder when I was younger but only for fun!

J - Job title: I am currently in school at the moment but hope to be a Psychologist when I am older as I have learnt a lot since I developed RSD and want to try and help others! I am also hoping to start a college course from September on Health and Social Care

K - Kid(s): Lol, i'm waaaay too young to have kids!!! I do have my 'fur babies' though who I pretend are my children lol!!

L - Living arrangements: I live in a 3 bedroom house in the UK with my parents and pets (springer spaniel, chameleon, chinchilla, hamster, fish and African Grey Parrot)

M - Mom's name: Andrea although I call her mum!

N - Nicknames: I don't really have a nickname - people usually just call me Ali.

O - Overnight hospital stay other than birth: I have stayed in the hospital LOTS of times overnight - too many to remember!!

P - Pet Peeve: Bad drivers, insensitive people etc

Q - Quote from a movie: "I carried a watermelon"! Dirty Dancing

R - Right or left handed: I'm right handed but really must try to write left handed also now that my RSD is flaring up in my arm all the time!! Maybe that way, at least if one arm is bad, i'll have the other to use still lol!

S - Siblings: I don't have any siblings and like it that way!

T - Time you wake up: When I am at school, I have to wake up at around 6.45am. On a none school day though, it just depends and I usually lay in for a bit as I don't sleep a lot!!

U- Underwear: I wear it!

V - Vegetable you dislike: Coliflower is gross!

W - Ways you run late: I am always running late now that I have RSD as it takes me forever to wake up!! My mum has learnt now to get me up really early though so that gives me time to wake up and shower and not be too late!

X-rays you've had: I have had an x-ray of my radius and ulna, total left leg, nose and teeth. I have also had an MRI scan.

Y - Yummy food you make: I don't really make food but like baking cookies and buns when I get chance!

Z - Zoo favorite: I love White Tigers!!

Website That I Created For Kids In Pain!!!!

I haven't updated my blog for a short period of time as things have been pretty busy here but thought I would make a post about a website that I created for kids in pain as hopefully it will help some people!!

Since I have been diagnosed with RSD, I had always wanted to create a website especially for children and young people dealing with a chronic pain disorder! Throughout the 2 years that I have had RSD, I have had such a hard time trying to find teenagers to talk to that are going through a similar situation to me and I know many other young people have also.

This past weekend, I decided that I would have a go at setting the site up and it is now all up and running with it's own domain name!!! We were just going to create the site for young people with RSD but I know that there aren't that many so my mum came up with the idea to have it for kids dealing with any chronic pain condition and their families!!

The website has lots of information on all sorts of chronic pain conditions such as RSD, Fibromyalgia, Arthritis etc and even has it's very own forum where you can go and talk to others who are in a similar situation to yourself!!!

I hope that some of you will join the forum and try and get the word out about it so that hopefully, other teens wont have to deal with a chronic pain condition on their own!!

The link to the website is:

www.kidsinpain.co.uk

You will also find a section on there with the forum which you are more than welcome to join should you wish!!

The site still needs a lot of work doing to it but it is up and running and that is the main thing!

Please feel free to check it out and if you have any questions or feedback, please let me know!!

Physio Appointment and Decisions!!!!

First of all let me say a huge thank you to everyone that replied to my last post about the second anniversary of developing RSD!!! It means a lot when I recieve posts from others and I am SO lucky to have you all as my friends!! Thank you for taking the time out to read my blog - I truly appreciate it!!!

Last week, I had an appointment with my Physiotherapists. I hadn't seen them for a while due to my grandad passing away, Christmas break, school and mums work etc so it was nice to catch up with them!!!

I asked the Physio's to look at my left arm as I have been having quite a lot of pain in it and it goes red a lot sometimes and is very tender in some areas. The Physio's asked me to change so that they could examine my arm and they asked what I did. I told them that I fell on some ice going out to the taxi and knocked my arm. They got me to do lots of movements and said that there didn't appear to be any fractures there and that they suspect that it is a spread of the RSD. They didn't so it in so many words but said that it was a 'Pain Response' and that I need to see my Pain Management Doctor to diagnose and treat it.

I'm so upset that I might be dealing with another spread as that is the last thing I need right now!!!! Hopefully, we will be able to "manage" it though and if it is caught soon enough, it will go into some form of remission. I have been given some exercises to do and I try and do them on a daily basis - they are really painful but I know that it is either use it or lose it and I don't want to risk things getting any worse!!!!

After the Physio's examined my arm and shoulder, they went and checked my foot out. I have pretty bad Dystonia in my leg as well as the RSD and the first thing the physio said when she saw my leg was, "It looks worse than when I last saw you"!!

My Physio examined my leg and tried her darn hardest to move it but it wouldn't move even a tiny bit!!!!! It took them half an hour and a lot of strength to get my leg to move a little bit!!! The Physio said that they need to try and re-think their options now as it is obvious that Physio alone isn't helping in my case. I have been having weekly Physio (and sometimes more than that) for 2 years now and it hasn't helped with the Dystonia at all.

The options that the Physio's gave us was to try either Botox, Electrical Stimulation to try and stimulate to muscles into working or casting my leg. The casting has alreaady been mentioned and I wasn't very happy about that at all as I have read so many horror stories and know that you should neve cast an RSD limb anyhow.

The Physio's told us to go home but that they wanted to see me a week later (this week) and that they were going to arrange for me to try and see a Neuro Physio if at all possible as they should have some more ideas as to what might help and what wont.

I went to Physio again yesterday and we met up with the Neuro Physio. She is really nice and friendly and my Physio's told them what they had been working on and how I was responding etc. The Neuro Physio examined my leg and said that I have a pretty severe case of fixed Dystonia and she agreed that they needed to seek other options.

It took the Neuro Physio over 30 minutes to move my leg yesterday so it was pretty obvious that things just aren't getting any better. The Neuro seems to think that I have a 'fatigue' in my muscles and that you basically have to try and tier them out before you can even try and do anything with them.

The Physio's were discussing things whilst we were there and the neuro physio suggested trying a splint with more pressure applied at one side to see if that would try and get my leg back into the correct position. After discussing my case though, they decided that they didn't think it would work as the spasms in my leg are just too strong. They also mentioned casting my leg but thought that would be a bad idea because of the risk of even more muscle wasting and lesions etc - I was pretty relieved that they didn't want to try that as I don't think it is something I would be willing to try really.

The last option available was to try Botox and I think that is probably the route they will decide to go down if anything. The Neuro Physio was really nice and explained how Botox worked so that we were as informed as possible. My mum asked if the botox could make me worse as both of the nerve blocks I have had done did (the first one put me in a wheelchair for 13 months and the second caused really bad myoclonic spasms) and she said that she honestly didn't know but that they would have to be real careful as if they hit the wrong nerve, it could cause more harm than good and that it isn't a decision to take lightly really.

The Physio's are going to discuss the Botox with my Pain Management Doctor and we should hopefully have an answer for when we go to physio again (the end of April). The Physio's said that the Botox would probably make my pain worse in the short term so if they were going to try it, they would suggest doing an epidural or something to try and put any pain flares to an halt.

They also suggested that if we chose to go ahead with the Botox, it would be really useful if I was admitted into hospital a week after I had the procedure done so that they could do some intense physiotherapy with me to try and give me the best chance of regaining any function in my foot. I thought it was a good idea and so did my mum - I would also be allowed home should I wish on a night so at least I wouldn't have to sleep in the hospital.

So now, we are playing the waiting game!!! I really wish that the Physio's could have given us an answer yesterday as to what they were going to do but I know they need to discuss it with my doctor first and give us time to research it at home ourselves. The NHS wont do any procedures also without getting confirmation from all of the doctors involved so I think that is making things a bit more difficult also. Hopefully when we go next, we will have some answers!!!! The Physios also want me to try and go to Physio more often so are going to try and arrange a medicar for me so that my mum doesn't have to go all the time and my nanan could come with me (I think that would probably be helpful as she still doesn't understand RSD!!). They also suggested trying to get Physio at my GPs office but said that we would have to be careful and make sure the Physio knew about RSD and what he/she was doing!!

In more positive news!!: I have started going back to mainstream school on a Friday now. I come home for dinner as the teachers thought it would be too hard on me to stand for such a long period of time. It's hard at times but I seem to be coping OK and my friends seem to be a little better than they were last time - I think the teachers must have had a word with them about that and told them that we weren't happy!!!

Me and my mum are also going to see Dancing on Ice today at an arena near where we live. Dancing on Ice is a TV Program where they take celebs and try and get them to dance on ice like professions but they are doing a tour also!! We have been to see them before and they were really good so i'm looking forward to seeing it again!!

Thanks for reading my blog and I will keep you all updated when I hear anything else from my Physio's!!!!!